A Brief Questionnaire to Assess Post-Exertional Malaise

Abstract:

Post-exertional malaise (PEM) is a key symptom of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Currently, five PEM-items from the DePaul Symptom Questionnaire (DSQ) were recommended as a first step in measuring this symptom for patients with ME and CFS by the National Institutes of Health/Centers for Disease Control and Prevention (NIH/CDC) Common Data Elements’ (CDE) working group.

The second step in this process, as recommended by the NIH/CDC CDE working group, involves assembling information from various sources to confirm the presence of PEM. There have not been any efforts, to date, to standardize this second-step process in the assessment of PEM.

The current study examined whether five supplementary items on the DSQ could be used to operationalize the second step of the recommendations made by the NIH/CDC CDE working group. The five supplementary DSQ PEM duration items correctly categorized patients with ME or CFS 81.7% of the time, while incorrectly categorizing multiple sclerosis (MS) and post-polio syndrome (PPS) as ME or CFS only 16.6% of the time. The findings suggested that a PEM second-step process could be operationalized using supplementary DSQ items.

Source: Cotler J, Holtzman C, Dudun C, Jason LA. A Brief Questionnaire to Assess Post-Exertional Malaise. Diagnostics (Basel). 2018 Sep 11;8(3). pii: E66. doi: 10.3390/diagnostics8030066.

Are current chronic fatigue syndrome criteria diagnosing different disease phenotypes?

Abstract:

Importance: Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms diagnosed with a number of different polythetic criteria. Heterogeneity across these diagnostic criteria is likely to be confounding research into the as-yet-unknown pathophysiology underlying this stigmatised and debilitating condition and may diagnose a disease spectrum with significant implications for clinical management. No studies to date have objectively investigated this possibility using a validated measure of CFS symptoms–the DePaul Symptom Questionnaire (DSQ).

Objective: To examine whether current CFS diagnostic criteria are identifying different disease phenotypes using the DSQ.

Design: Case control study.

Setting: Clinical Research Facility of the Royal Victoria Infirmary, Newcastle upon Tyne, UK.

Participants: 49 CFS subjects and ten matched, sedentary community controls, excluded for co-morbid depression.

Main outcomes and measures: Self-reported autonomic and cognitive features were assessed with the Composite Autonomic Symptom Score (COMPASS) and Cognitive Failures Questionnaire (COGFAIL) respectively. Objective autonomic cardiovascular parameters were examined using the Task Force® Monitor and a battery of neuropsychological tests administered for objective cognitive assessment.

Results: Self-reported autonomic and cognitive symptoms were significantly greater in CFS subjects compared to controls. There were no statistically significant differences in objective autonomic measures between CFS and controls. There were clinically significant differences between DSQ subgroups on objective autonomic testing. Visuospatial memory, verbal memory and psychomotor speed were significantly different between DSQ subgroups.

Conclusions and relevance: The finding of no significant differences in objective autonomic testing between CFS and control subjects may reflect the inclusion of sedentary controls or exclusion for co-morbid depression. Consistent exclusion criteria would enable better delineation of these two conditions and their presenting symptoms. Findings across CFS subgroups suggest subjects have a different disease burden on subjective and objective measures of function, autonomic parameters and cognitive impairment when categorised using the DSQ. Different CFS criteria may at best be diagnosing a spectrum of disease severities and at worst different CFS phenotypes or even different diseases. This complicates research and disease management and may contribute to the significant stigma associated with the condition.

Source: Laura Maclachlan, Stuart Watson, Peter Gallagher, Andreas Finkelmeyer, Leonard A. Jason, Madison Sunnquist, Julia L. Newton. Are current chronic fatigue syndrome criteria diagnosing different disease phenotypes? PLoS ONE. Published: October 20, 2017https://doi.org/10.1371/journal.pone.0186885   http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0186885 (Full article)

Identifying Key Symptoms Differentiating Myalgic Encephalomyelitis and Chronic Fatigue Syndrome from Multiple Sclerosis

Abstract:

It is unclear what key symptoms differentiate Myalgic Encephalomyelitis (ME) and Chronic Fatigue syndrome (CFS) from Multiple Sclerosis (MS). The current study compared self-report symptom data of patients with ME or CFS with those with MS. The self-report data is from the DePaul Symptom Questionnaire, and participants were recruited to take the questionnaire online.

Data were analyzed using a machine learning technique called decision trees. Five symptoms best differentiated the groups. The best discriminating symptoms were from the immune domain (i.e., flu-like symptoms and tender lymph nodes), and the trees correctly categorized MS from ME or CFS 81.2% of the time, with those with ME or CFS having more severe symptoms. Our findings support the use of machine learning to further explore the unique nature of these different chronic diseases

 

Source: Ohanian D, Brown A, Sunnquist M, Furst J, Nicholson L, Klebek L, Jason LA. Identifying Key Symptoms Differentiating Myalgic Encephalomyelitis and Chronic Fatigue Syndrome from Multiple Sclerosis. Neurology (ECronicon). 2016;4(2):41-45. Epub 2016 Dec 19. https://www.ncbi.nlm.nih.gov/pubmed/28066845

 

The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

PURPOSE: Debilitating fatigue is a core symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); however, the utility of patient-reported symptom outcome measures of fatigue for ME/CFS patients is problematic due to ceiling effects and issues with reliability and validity. We sought to evaluate the performance of three patient-reported symptom measures in a sample of ME/CFS patients and matched controls.

METHODS: Two hundred and forty ME/CFS patients and 88 age, sex, race, and zip code matched controls participated in the study. Participants completed the Multidimensional Fatigue Inventory-20, DePaul Symptom Questionnaire, and RAND SF-36.

RESULTS: The general and physical fatigue subscales on Multidimensional Fatigue Inventory-20, as well as the role of physical health on the RAND SF-36, demonstrated questionable or unacceptable internal consistency and problematic ceiling effects. The DePaul Symptom Questionnaire demonstrated excellent internal reliability, and less than 5 % of participants were at the ceiling on each subscale. The post-exertional malaise subscale on the DePaul Symptom Questionnaire demonstrated excellent clinical utility as it was able to differentiate between ME/CFS patients and controls (OR 1.23, p < .001) and predicted ceiling effects on other patient-reported outcome subscales. A score of 20 on the post-exertional malaise subscale of the DePaul Symptom Questionnaire optimally differentiated between patients and controls.

CONCLUSIONS: Significant ceiling effects and concerns with reliability and validity were observed among Multidimensional Fatigue Inventory-20 and RAND SF-36 subscales for ME/CFS patients. The DePaul Symptom Questionnaire addresses a number of concerns typically identified when using patient-reported outcome measures with ME/CFS patients; however, an improved multidimensional patient-reported outcome tool for measuring ME/CFS-related symptoms is warranted.

 

Source: Murdock KW, Wang XS, Shi Q, Cleeland CS, Fagundes CP, Vernon SD. The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome. Qual Life Res. 2016 Sep 6. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/27600520

 

Factor Analysis of the DePaul Symptom Questionnaire: Identifying Core Domains

Abstract:

The present study attempted to identify critical symptom domains of individuals with Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Using patient and control samples collected in the United States, Great Britain, and Norway, exploratory factor analysis (EFA) was used to establish the underlying factor structure of ME and CFS symptoms.

The EFA suggested a four-factor solution: post-exertional malaise, cognitive dysfunction, sleep difficulties, and a combined factor consisting of neuroendocrine, autonomic, and immune dysfunction symptoms. The use of empirical methods could help better understand the fundamental symptom domains of this illness.

 

Source: Jason LA, Sunnquist M, Brown A, Furst J, Cid M, Farietta J, Kot B, Bloomer C, Nicholson L, Williams Y, Jantke R, Newton JL, Strand EB. Factor Analysis of the DePaul Symptom Questionnaire: Identifying Core Domains. J Neurol Neurobiol. 2015 Sep;1(4). doi: 10.16966/2379-7150.114. Epub 2015 Sep 17. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4830389/ (Full article)

 

Test-Retest Reliability of the DePaul Symptom Questionnaire

Abstract:

BACKGROUND: The DePaul Symptom Questionnaire (DSQ) was developed to provide a structured approach for collecting standardized symptomatology and health history information to allow researchers and clinicians to determine whether a patient meets the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), myalgic encephalomyelitis (ME), and/or chronic fatigue syndrome (CFS).

PURPOSE: The purpose of this study was to examine the test-retest reliability of the DSQ.

METHODS: Test-retest reliability of the measure was examined with a sample of 26 adults self-identifying as having either ME/CFS, ME and/or CFS and 25 adults who did not self-identify as having these illnesses and were otherwise healthy controls.

RESULTS: Overall, the majority of items on the DSQ exhibited good to excellent test-retest reliability, with Pearson’s or kappa correlation coefficients that were 0.70 or higher.

CONCLUSIONS: Thus, the present study suggests that the DSQ is a reliable diagnostic measure that can provide a standardized way of examining illness constructs and symptomatology among patients who identify as having ME/CFS, ME and/or CFS.

 

Source: Jason LA, So S, Brown AA, Sunnquist M, Evans M. Test-Retest Reliability of the DePaul Symptom Questionnaire. Fatigue. 2015 Jan 1;3(1):16-32. Epub 2015 Jan 8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4788471/ (Full article)

 

Examining case definition criteria for chronic fatigue syndrome and myalgic encephalomyelitis

Abstract:

BACKGROUND: Considerable controversy has transpired regarding the core features of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Current case definitions differ in the number and types of symptoms required. This ambiguity impedes the search for biological markers and effective treatments.

PURPOSE: This study sought to empirically operationalize symptom criteria and identify which symptoms best characterize the illness.

METHODS: Patients (n=236) and controls (n=86) completed the DePaul Symptom Questionnaire, rating the frequency and severity of 54 symptoms. Responses were compared to determine the threshold of frequency/severity ratings that best distinguished patients from controls. A Classification and Regression Tree (CART) algorithm was used to identify the combination of symptoms that most accurately classified patients and controls.

RESULTS: A third of controls met the symptom criteria of a common CFS case definition when just symptom presence was required; however, when frequency/severity requirements were raised, only 5% met criteria. Employing these higher frequency/severity requirements, the CART algorithm identified three symptoms that accurately classified 95.4% of participants as patient or control: fatigue/extreme tiredness, inability to focus on multiple things simultaneously, and experiencing a dead/heavy feeling after starting to exercise.

CONCLUSIONS: Minimum frequency/severity thresholds should be specified in symptom criteria to reduce the likelihood of misclassification. Future research should continue to seek empirical support of the core symptoms of ME and CFS to further progress the search for biological markers and treatments.

 

Source: Jason LA, Sunnquist M, Brown A, Evans M, Vernon SD, Furst J, Simonis V. Examining case definition criteria for chronic fatigue syndrome and myalgic encephalomyelitis. Fatigue. 2014 Jan 1;2(1):40-56. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3912876/ (Full article)

 

Validating a measure of myalgic encephalomyelitis/chronic fatigue syndrome symptomatology

Abstract:

OBJECTIVES: The present study sought to validate a comprehensive self-report measure of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptomatology to aid in clinical and research assessment.

METHOD: Exploratory factor analysis (EFA) was used to establish the underlying factor structure of the DePaul Symptom Questionnaire (DSQ) (Jason, Evans, et al., 2010) using a well-characterized sample of individuals (92.6% met the Fukuda et al. criteria (1994) and/or the Clinical Canadian Criteria (Carruthers et al., 2003)), and this structure was then tested on a less stringently recruited sample of individuals utilizing a confirmatory factor analysis (CFA). Convergent and discriminant validity of the DSQ were also examined utilizing alternative measures of symptomatology and functioning.

RESULTS: A 3-factor solution was found using EFA (Neuroendocrine, Autonomic & Immune Dysfunction; Neurological/Cognitive Dysfunction; Post-Exertional Malaise) and the fit of this factor structure was adequate for the second sample.

DISCUSSION: The DSQ is a valid measure of ME/CFS symptomatology. The emergent factors were consistent with previous literature on symptom clusters, and convergent and discriminant validity were established.

 

Source: Brown AA, Jason LA. Validating a measure of myalgic encephalomyelitis/chronic fatigue syndrome symptomatology. Fatigue. 2014;2(3):132-152. Epub 2014 Jul 23. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4871625/ (Full article)